Chronic Chick Talk

Perseverance was a word I was thinking about the other day. I thought about the ways I have perserved thru the many aspects of my illness. I have gone from being afraid of pain, to being able to accept it being a part of my life. If I don’t wake up in pain I wonder where it is. For those of you living with chronic pain, or another chronic illness you understand exactly what I mean. I have my days where I don’t know how I will make it through the day. The longer the flare last the more I wonder if my “normal” strength will return. Someday, it’s extremely hard to preserve and other days it’s easier to do. I’ve had to learn to say the serenity prayer to myself and accept things a day at a time.

Christopher Reeve is someone that I admire- God Bless Him. He did so much for the disabled and he was a quadriplegic. He did not let his disability hold him back. He kept plugging away, His wife a great woman who kept plugging away. Both of these people have preserved away while dealing with to different things- One as a person living with chronic illness and another whom was the spouse of a person with chronic illness.

In life, we have to find our own way to persevere. For the baby it may be just to roll over, for the college student it may be to finish college passing all there classes and for an elderly person it is to walk across the floor without breaking a bone.

How do you persevere in your life?

Each week I’m going to pick a word to describe how I deal with living with chronic illness- Make suggestions of a word.

Last few days, have been ruffs. I’ve been have an awful pain in my extremities. My muscles felt like they were rocks. It was unreal because it was a struggle just to stand up. I thought I was going to lose my mind. When the lupus knocks me on my behind, it’s a struggle to get back up. Slowly, I’m regaining my strength. I always worry that I won’t regain my strength. I updated my message board because I was getting some horrible spam videos. I managed to discontinue it. I have a couple of polls on my message board; one is for a name of a cook book and another is  a chronic illness poll. Please stop by and register and leave me a line. It looks inactive, but it’s just starting to wake up- a work in progress. My container garden is coming along well. I have one pepper about the size of a small pearl onion. I added a few more things; strawberries (my favorite), cucumber and brussel sprouts. I know what a lot of you are probably saying Yuck!! Brussel sprouts. I read somewhere they taste better out of your own garden, then store bought.

Most people don’t want to be around a chronic complainer. You know the one that shows up at the family picnic. You see her coming and everyone starts disappearing, but wait you couldn’t get away from dear old Aunt Bertha. So you endure the conversation, wondering when she’ll ever quit whining about Uncle Harold’s snoring and Aunt Beth’s teeth. You sit there for the 30 minutes wondering when you will find your out.

While writing this it got me to thinking, where do I rank on the complainer score sheet? Yeah, it’s hard not to complain when life seems to suck when you’re in a lupus flare, and the pain never seems to end. You wake up and if its not one thing hurting it’s another new symptom.

I’m challenging myself not to complain as much about living with lupus and pain, even if it does suck. After all everyone one around me knows I have lupus. It’s not like you can’t figure out when I’m in pain. I’m not very good at hiding it, although I have tried to hide it. I won’t say that I will not complain about living with lupus by no means.

Here’s my thinking, if I don’t complain as much, maybe I won’t be constantly reminded of how much I hate lupus. Yeah, it’s given me some positives, but the negative ones outweigh the positive ones. (that’s another post-tba)

So I’m going to ask you to try this test:

Find yourself a pen and paper and write down all your complaints for the day.
Look at each one and think how you could possibly reduce the amount of complaining you do in a day. Is the complaint something you could fix? Is the complaint something you have been avoiding doing? (get it done, so you can check it off your list).

So, the next time you complain about something find something that you can compliment. You see the compliment is good for the receiver and for the giver. You both should come out feeling O’ so good.

Finding ways to de-stress my life has become important to me. I become overwhelmed pretty easy since living with lupus. The evening times are my anxiety prone times. In those few hours my daughter comes home, dogs are more active, homework helping, and fixing dinner and eating dinner.

I had to reduce my stress level, so we started planning meals ahead of time. A lot of our recipes come from All Recipes. The site has a lot of simple recipes and an added plus is they are economical. Finding simple recipes is important while dealing with chronic illness. We plan our meals according to what is going on that day. If I have a doctor’s appointment it’s usually crock pot or eating out. On the days, my daughter has tae kwon do we either prepare meals ahead of time, or you guessed-crock pot. We put our menus on the refrigerator to remind us to pull out the meat.

Another thing, that’s helped me, is to only shop for 2 weeks of groceries. It takes less time to shop and takes less time to put things away. The putting away is my least favorite part of grocery shopping. I’m usually exhausted by the time we finish one shopping trip. I’ve had to teach myself not to over due things. It’s easier said then done.

The last thing, we do is avoid the rush hour shopping times. The busiest time here is early evening on weekdays and Saturday nights. During the day on Saturday’s is sudden death because everyone and there grandmother is out. In the evening on a Saturday night are the slowest times in my area.

All of the de-stressors have made my life easier. They have been a real life saver when dealing with a lupus and a teenager with ADHD.

I came upon some interesting news reports and blogs about the effect of the energy saving bulbs and several medical conditions. People with lupus are reporting going into flares from the bulbs. I was shocked to find this out after spending the winter in my chair next to one of these bulbs. I quickly removed this bulb to see if it would help. I was thinking anything that would help, I’m willing to try. I’ve spent most of this past winter in one flare after another with the lupus.

Then I started to dig even deeper about the affects of these bulbs. They are shown to cause migraines, epilepsy seizures, dizziness, lupus and other autoimmune flares, and other medical conditions. I could go on about the affects of these bulbs.

Some people with lupus are photosensitive and have reactions to the sunlight so it only makes sense that we would be affected by these bulbs. Time will tell if I start having fewer flares together or the pain decreases because of these bulbs. Not everyone is affected the same way by these bulbs. But when you live with chronic pain you’d stand on your head if would decrease your level of pain.

Sources :

BBC News

Spectrum Alliance 

Corislupusupdates 

A Few Shots From A Chronic Chick 

This is a picture of my sunflower potted garden. I created the garden last spring/summer. The sunflowers were planted in pots so that I could have a garden. Being creative while living with lupus can be tough-But a girls gotta do what a girls gotta do. This year will prove to be another struggle to have a garden, but time will show my creative side. Living Life with lupus the best way I know how.

They give lots of great  puppy dog  kisses. The black and white dog is a shih tzu named Darcy and The white dog is named Mason, whose a Maltese poodle. They have an extraspecial place in my heart. They both love me unconditional and can’t ask for two better doggies. More pictures to come.

 Mason is enjoying a snooze in his favorite bean bag chair, which he stole from my daughter.

 Darcy sleeping next to Mason in her beloved royal blue coat.

Today had been pretty good for me. Yesterday, my daughter had tae kwon do. She’s a yellow belt. She will test out to be an orange belt soon. Her instructor says she’s going to be a force to reckon with soon. She’s been working really hard to test out for her orange belt. I can’t wait to see her test out for her next belt. The instructor wants her to teach a class of pewees when she get older. That is such a high honor to do. I am more then proud of her. She’s going to spar (fight) in the next tournament. She didn’t spar at the last one. She wanted to just watch to know what to expect. She doesn’t like surprises in stuff like that. The tae kwon do has help with her ADHD. She’s able to focus better.

I was able to fix my dog’s shirt today by putting some Velcro on it. It’s nice to feel better today. Each day is a gift from God and I’m happy for that. I don’t know what tomorrow will bring, but I’ll take what I can get. I watched the show Deadliest Catch on TLC. Those guys and an occasional gal are awesome. I can’t imagine being out in the middle of no where without any land in sight.

 I had the pleasure of interviewing Wick Davis of the Lupus Foundation of America.

What motivates you to continue to drive to the Lupus Foundation of America through all that Washington DC traffic?

Wick Davis Says:  First let me just say that people outside of the DC area have absolutely NO IDEA how awful the traffic is here. It is like nothing I have ever seen, and I’ve lived all over the country. It’s even awful on the weekends. I always chuckle when friends of mine from out of state complain about the traffic where they live. They have no idea. None! That said, my commute into DC isn’t too bad. I either take the bus, which is great, because I can sit and read, or relax, for an hour or so. I’m not sitting in traffic, wishing I was somewhere else. Or, if I don’t take the bus, I catch a ride with a coworker and her husband. Either way, I’m saving on gas, wear ‘n tear on my car … and most importantly, I’m saving my sanity!

What is your job at the Lupus Foundation of America?

Wick Davis Says:  My title is Director, Online Content & Community. So what does that mean? Well, it means a lot of things. I am responsible for all things pertaining to the lupus.org Website. Everything from creating new content when needed, to updating existing content, to maintaining the navigation on the Website; to ensuring the Website’s links are working, to making sure everything is spelled and punctuated correctly. Basically, my role is to make sure that users of our Website have a positive experience. I am also responsible for the Lupus Now magazine Website  and the World Lupus Day Website .

I host the monthly LFA Web chats. I am responsible for some writing content for, and the distribution of, our enewsletters. I write the LFA blog, “On the Road to a Cure,” . I am responsible for the LFA presence in Face book, and to a lesser extent, MySpace. I make sure that LFA PSAs (public service announcements) get posted to YouTube. I monitor the new LFA message boards. And since I have overall knowledge of all of these things, I try to make sure they’re all connected, and that people are aware of these great resources. For example, if we post a new PSA to You Tube, I write about it in the blog, and post it to both Face book and MySpace. Lots of cross promotion! I have to say … the one thing I really enjoy about my job at the LFA (and that I enjoyed while I was at the ADA) is the fact that I get to help people every day. Whether it’s providing timely and accurate information via the Website, or monitoring the LFA message boards, or hosting a Webchat, or writing the LFA blog … I enjoy all of that. I find it personally rewarding.

Does working at the Lupus Foundation of America have a personal connection to you?
Wick Davis Says:  Actually, it does not. Prior to my joining the LFA, I worked at the American Diabetes Association for almost 6 ½ years. A good friend of mine knew I was looking to make a career change and he had seen a position advertised on the lupus Website. He passed along the job posting to me and the rest, as they say, is history. However, after joining the LFA, I came to find out that a good friend of mine in Amsterdam has lupus. So she was excited that I was working for the LFA.

Yesterday, I went to my 4 month check to the rheumatologist. It’s always a long ride there and back. We left in the morning and didn’t get home until 5 pm. It made for a really long day. I’ve had this upper respiratory stuff and he had to give me an antibiotic. He checked me for pneumonia and it came back clear. That was a major relief. I still have other tests out, but this is a major relief.

I have to go a rheumatologist so far away because I’ve dealt with a lot of my symptoms are in my head. Many doctors don’t want to diagnosis you with lupus. I totally understand that, but refusing to treat symptoms is unrealistic. I suffered in pain with little relief for 4 years because of ignoring my symptoms. I can say I’m thankful for the doctors I have today. All of them listen to me and react when they need to. I feel more like a patient, then a number in their checkbook.

Good doctors and nurses are hard to find. If you have good doctors hang on to them because they are hard to find.

I was blog hopping to my friend Michelle and learned of the death of a 16 year old girl with lupus dies. DCF took her away because she wanted to try different medications for treatment. It horrifies me that DCF would take away a child from her home while she fights for her life. Chelsey Cruz wanted to try something that may not give her the horrible side effects of medications taken by lupus patients.

In my opinion this girl was more of an adult then any one else. It maddens me that a child so sick could be yanked out her home because of disagreement of medications. I know myself that I don’t always agree with the treatment doctors prescribe. I have had to reduce medications or refuse to take medications because of side effects. This girl is more of an adult then many adults now a day. When someone has dealt with a chronic illness such as lupus they should be able to make medication choices. I’m sorry but if it’s my body I will chose what I take in.

I pray for the family and friends of Chelsey Cruz. I pray that the family will find some healing after the death.

Links to Story

Mother’s Rage Lives On

Girl in Medical Dispute Dies

Cruz Letter 

Walk A Mile In My Foot Steps Then Tell Me How it Feels……. ( my thoughts).